Ways to involve consumers

Do consumers want to participate in research?

‘Consumers felt that they were best able to comment on the relevance of the research to their experience and their perceptions of the importance of that research.…They [consumers] felt that they had an important role to play in commenting on the relevance and the involvement of consumers in the whole research process, and the plans to disseminate results to consumers and influence practice.’
—Phyllis Butow, Chair, Psycho-Oncology Co-operative Research Group

‘Within the clinical trial group that I currently chair which is the Psycho-Oncology Co-operative Research Group (PoCoG)—one of the cancer clinical trial groups funded by Cancer Australia—we have a consumer advisory group which we share with PC4, the primary care or GP clinical trial group. We’ve tried to get a group of about 15 consumers, who we advertised for nationally, who would develop an ongoing relationship with us.

We provide training in the sorts of trials that we do, which have some unique features that are not shared by drug trials, for example. Psycho-oncology or general practice trials are often complex and about behaviour rather than about drugs. So we provide ongoing training to the consumers.

The consumers are involved on our committees, both at the policy level—developing direction for the clinical trial group—and also on our scientific advisory committee, looking at new proposals coming in from people who are thinking about doing research and would like PoCoG to provide advice and endorsement. They’ve been an integral and a very important part of the organisation for some years.’

−Phyllis Butow, Chair, Psycho-Oncology Co-operative Research Group

‘We finished a project last year where the focus was the development of a self-management program. We had consumers contribute to the nature of the intervention, giving us input as to what would work and what wouldn’t, and contribute to the development of the teaching materials for the nurses who were going to deliver that. So, we developed some videos and the consumers came and they were videoed and acted for us so we could actually demonstrate scenarios and things. And then they also contributed to the discussion of what the findings have meant and how best to get that integrated into the practice setting.

It’s more recent, our collaboration with consumers in the whole process of research. In the past, we may have actually invited their input. But we’re now really trying to move toward where that’s an integral part of every phase, from conceptualizing right through to dissemination. As a true, genuine partnership around involving them actively and not just sort of when we feel it’s necessary. They are part of all the team meetings. And that’s been really helpful.’

−Patsy Yates, Chair, Queensland University of Technology School of Nursing

What knowledge, skills and experience do consumers need to be involved in research?

The answer to this question will depend on the purpose of the organisation or activity and the roles expected of consumers. The following tools will assist in matching consumer skills to organisational goals.

How do I find consumers to be involved?

Consumer involvement in research requires some skills and you will find it easier if you are able to recruit consumers who are already experienced consumer advocates or representatives in your health service or organisation. You can also approach consumer groups and organisations that are already established and who can nominate consumers to be involved in your research team.

How one consumer involved others...

‘About 13 years ago, we took over the support group at the Sydney Adventist Hospital, where I had my operation. But prior to that we were engaging with people who had suffered the same fate as me, talking to them on the telephone, following up a request from my urologist. So that’s how we started to engage with people. And we realised the most important thing for us to do was to listen to their plight and where they’re at in their journey and then apply our experience to that and build on it. The first thing for us to do in engaging with people and building up people who can work well at all the different levels is to engage with them personally, see what their skill sets are and then take it from there. That’s our grassroots support group network type approach. The support group network of the Prostate Cancer Foundation of Australia has over 135 groups. It’s a rich source for recruiting people and a stepping stone for people to get involved with advocacy.’